20 Jan 2014
STEPHANIE CAMPBELL, CHeBA CHAMPION (FITNESS AMBASSADOR FOR CHeBA)
I’m jogging up a ridiculously steep street in Sydney’s leafy, bayside suburb of Mosman. My knees ache, my quads are burning, and my lungs hurt from straining for air. No point pretending – I hate uphill. Forehead glistening with sweat, I grit my teeth and finally reach the crest, attempting to breathe through a massive stitch in my side as I take the pace back down to a steady walk to recover. The oversized Garmin fitness watch strapped to my left wrist bleeps encouragingly at me to signal I’ve covered another kilometre, and the narrator of the audio book on Neuro-Linguistic Programming I have chosen to listen to on this particular outing tells me to ‘think positively’. I smile with a grim sense of satisfaction. My 24-year-old body may not be openly thanking me for this daily dose of torture, but that isn’t my primary concern. What the observer may not realise is that I’m not doing this to maintain a svelte figure, (not that I’m knocking anyone who exercises in the pursuit of aesthetic perfection), but the real motivation behind today’s cardio mission is a concern about a much more troubling issue that has long weighed on my mind – maintaining the health of my ageing brain.
“Dementia is the third leading cause of death in Australia, just behind heart attack and stroke, and the main cause of disability in people aged over 65,” says Marleina Fahey, manager of new dementia care program ‘Stronger Carers’, funded under the Australian Government’s Aged Care Service Improvement and Healthy Ageing Grants. “Every six minutes a new case of dementia is diagnosed.”
Ms Fahey, an affable woman in her late forties, works for non-profit aged care provider Baptist Community Services – NSW & ACT. She radiates warmth, and is bubbly and positively brimming with enthusiasm when we meet to talk about her new project - no doubt a reflection of her passion for the subject of dementia care, in which she has specialised for the past 27 years.
She explains how the free program will support up to 300 family carers of people living with dementia in Sydney to manage the behavioural and psychological challenges associated with caring for their loved one at home – which, as she explains, are numerous, including: agitation, anxiety, aggression, hallucinations, misperceptions, delusions, depression, hoarding, socially disinhibited behaviours (including sexual behaviours), repetitive behaviours, sleep disturbances, wandering and incontinence.
“Working with people with dementia and their families I have been amazed by so many examples of determination, resilience and creative solutions to problems faced,” she says, and then tells me the story of a wife who had taped a note saying ‘ladies’ toilet’ to the back of the front door to stop her husband from wandering away from the house; and another story of a menopausal wife who, faced with a husband exhibiting hyper-sexual behaviour (he had requested sex for the seventh time that morning before breakfast), reassured him that they had indeed just made love and that he was fantastic; whereupon he immediately relaxed and happily sat down to read the morning newspaper.
“A 2003 study showed that carers of a family member with dementia had 23% higher levels of stress hormones and 15% lower levels of antibody responses than did non-carers. And in 2007, these carers were found to have the lowest wellbeing of any large group recorded by the Australian Unity Wellbeing Index in The Wellbeing of Australians: Carer Health and Wellbeing Report,” said Ms Fahey. “Clearly there is a need to support family carers of people living with dementia,” she said.
Stronger Carers consumer advisor, 65-year-old Helen James agrees that more needs to be done to help family carers navigate the minefield of challenges that are thrown in their path when faced with the shock diagnosis of their loved one. Mrs James’ own life was turned upside down eight years ago when her 64-year-old husband Gordon, who now lives in a high care nursing home, was diagnosed with Younger Onset Fronto-Temporal Dementia – Semantic Dementia which affects the ability of the brain to comprehend language. She said her husband went from being her fully functioning and engaged spouse to being completely dependent, struggling to make sense of the simplest words and phrases. “He would refer to his ‘pants’ as ‘trees’ and request ‘milk’ when he meant ‘water’,” she said. “It is very difficult looking after someone with dementia – and it’s truly one day at a time because you never quite know how the brain is going to react,” she said.
According to peak body for the condition, Alzheimer’s Australia, dementia describes a collection of symptoms that are caused by a variety of disorders affecting the brain. People with dementia exhibit changes in their thinking, behaviour and ability to perform everyday tasks - stemming from compromised brain function - that interferes with their normal social and working life. Currently 321,600 Australians live with dementia, and without a medical breakthrough that number is expected to increase to almost 900,000 by 2050.
Given the devastating implications for those who suffer from the condition and their families, and thanks to the activism of organisations like Alzheimer’s Australia, and more public cases such as the late Hazel Hawke’s personal struggle with Alzheimer’s disease, dementia has been thrown into the spotlight and government funding for research into dementia-related issues in recent years has increased. According to experts, however, a cure is still a long way off.
Speaking at Parliament House in Sydney in support of 2013 National Dementia Awareness Week on September 16, Alzheimer’s Australia National President and 2013 Australian of the Year, Ita Buttrose, said that in the absence of a cure, prevention was key.
“Maximising your brain health and managing your blood sugar, cholesterol levels, blood pressure and body weight can help reduce the risk of developing some of the most debilitating chronic diseases, including dementia,” Ms Buttrose said.
“During Dementia Awareness Week we want to encourage people to adopt healthier lifestyles and understand the connection between their physical health and their brain health. As our population ages, it’s vital for people to understand and improve their overall health, and that includes their brains as well as their bodies,” she said.
Enter the University of News South Wales’ Centre for Healthy Brain Ageing, or CHeBA, as it has come to be affectionately known by its supporters. The Centre was set up in October 2012 under the co-directorship of eminent professors Perminder Sachdev and Henry Brodaty, and researches all things brain-related with the aim to unlock the secrets to healthy brain ageing; much of which focuses on preventive measures.
According to research conducted by the Centre, up to 70% of cases involving the onset of dementia are attributable to lifestyle factors, and hence preventable, if appropriate action is taken earlier in life before significant brain deterioration occurs - actions like paying attention to exercise, diet, sleep, relaxation and mentally stimulating activities, like learning a new language, puzzles, anything that gets those neurons firing, according to Professor Brodaty - which brings me back to my own involvement in this story and my uncomfortable obsession with running up steep hills in Mosman.
In 2004, my maternal grandmother was diagnosed with dementia. An attractive and intelligent woman with a heart of gold, I witnessed my grandmother’s cognitive function gradually deteriorate over the period following her diagnosis, with debilitating accompanying changes to her behaviour, mood and capacity to take care of herself.
Her decline in 2012 was particularly rapid and after a stretch in hospital due to various health complaints, the move from her home of more than 60 years to a high care dementia care facility, although necessary, was incredibly distressing for her, my grandfather and all the extended family. She passed away about four months after being admitted, lingering in a vegetative state for four days in palliative care before finally succumbing to the ravages of her illnesses on 11 September 2012.
I remember sitting at the nursing home watching her gasp for air, her tiny, grey chest fluttering uncertainly underneath the bed sheets, and thinking, it shouldn’t have to end this way. And, this isn’t going to happen to me.
Hence hill running and my more recent decision to get involved with CHeBA’s new fitness ambassador program, which recruits like-minded people in their 20s and 30s who are keen to make a difference by modelling and promoting ‘brain healthy’ fit and active lifestyles in the community, spreading the long-standing, tried and true health message ‘prevention is better than cure’.
“CHeBA fitness ambassadors commit to undertaking at least two major fitness challenges each year and attempt to raise funds for our research,” program developer and Marketing and Communications Officer for CHeBA, Heidi Douglass said.
“In the context of getting older, positive ageing is the holy grail and a healthy brain is essentially how we get there. With more and more evidence suggesting that many of the risk factors for dementia and Alzheimer's disease don't just point to genetics but are lifestyle-related, it is imperative that we take steps from an early age to work toward not just a longer life, but a more enjoyable and capable one,” Ms Douglass said.
CHeBA clinical neuropsychologist Nicola Gates agrees. "People who exercise have better cognitive function, especially memory and executive function [the brain skills involved in organisation, planning and judgments], and lower dementia risk.
"While our brains shrink with age, there's evidence regular exercise can help counteract this by increasing the numbers of brain cells and the connections between them, along with the extra blood flow needed to sustain this new growth.
"People don't realise they can start influencing how well their brain ages from a young age - it's time we took a whole-of-lifespan approach to preventing dementia," Ms Gates said.
The fitness ambassador program has, according to Ms Douglass, already recruited 30 dedicated young adults, one of whom managed to raise more than $13,000 for the Centre by running in the Sunshine Coast Half Marathon last year. The recruits come from all walks of life but many have been touched by the effects of dementia, as Sydney-based CHeBA ambassador and Deloitte Corporate Tax Solicitor, Ricky Kitay, relates.
"In July 2011, my mother was diagnosed with early-onset Alzheimer's disease. Since her diagnosis, and notwithstanding the fact that the effects of this disease were experienced some time before the diagnosis was made, my day-to-day life has been substantially altered. Now the majority of my time is made available to my mother to ensure that she is taken care of, with help from my father, brother and sister,” Mr Kitay said.
“My motivation for becoming a CHeBA fitness ambassador was to spread the word about Alzheimer's and the effect it can have on the patient and carers as I don't believe the majority of people can comprehend it," he said.
As Australian entertainer and CHeBA's official Ambassador, PJ Lane, put it:
“Losing my father to dementia and watching how the disease progressed has inspired me to do everything and anything I can to make a difference. Awareness and early detection is vital but it’s the research by people such as Henry Brodaty and Perminder Sachdev that holds the key to a future without dementia and dementia-related illnesses.”
Reflecting on this fact as I lace up my running shoes each evening, I can’t help but smile when I see a new hill on the horizon.
Stephanie Campbell lives in Brisbane. She holds a Bachelor of Business (Public Relations) with Distinction from the Queensland University of Technology and is currently completing her Master of Arts (Journalism) through Charles Sturt University. With her ambassador responsibilities in mind, this year she plans to compete in the gruelling Bendigo Bank International Mountain Challenge on the Sunshine Coast and enter the Miss Universe Australia pageant to raise awareness of and funds for CHeBA brain research.